Patient and caregiver return to work after a primary brain tumor
Emma Nicklin, Isaac Phang, Susan Short, Petra Hoogendoorn, Florien Boele
Abstract
Background: Studies focusing on the return to work (RTW) experiences of patients with a brain tumor (BT) are scarce. We aimed to explore, in-depth, the occupational expectations, experiences, and satisfaction of patients who RTW after a BT diagnosis and treatment, those not able to, and their family caregivers. Methods: This multicenter, cross-sectional study utilized semi-structured interviews and reflexive thematic analysis. Interviews were conducted with adults diagnosed with primary BT, in employment/self-employed before diagnosis, currently in follow-up care, and also with their caregivers. Results: In total, 23 interviews (17 patients/6 caregivers) took place. Five themes were developed: (1) Early (adjustments and) expectations: "Thought I would be back at work the following Monday"; pre-treatment patients wanted to be better informed about potential recovery time and side-effects. (2) Drivers to RTW: "Getting my life back on track"; RTW was seen as a symbol of normality and also dictated by financial pressures. (3) Experiences returning to work: "It's had its ups and downs": patients who had successfully returned were supported by employers financially, emotionally, and practically. (4) Required support: "He had surgery and that was it": suggested support included a back-to-work scheme and comprehensive financial support. (5) Caring and paid work: The "juggling act": carer's work was significantly impacted; often reducing/increasing their working hours while managing increasing caring demands. Conclusions: Future research focusing on RTW in neuro-oncology populations is needed. Interventions should be developed to improve employer/employee communication, and increase knowledge about BT care and possibilities for RTW, to support patients and caregivers towards sustained employment.